Packing Autistic Kids: A French Scandal

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Packing Autistic Kids: A French Scandal

Post by Cadmusteeth » Wed Aug 08, 2018 2:24 pm

“Back in the bad old days of autism they thought it was caused by “refrigerator mothers”.

Well, right now, some psychiatrists have decided that the best treatment for autism is something not that far removed from sticking them in a refrigerator – literally. Enter “Le Packing”, which is the target of an unprecedented consensus statement just out from a list of 18 big-name autism experts (available free here).
This alleged therapy consists of wrapping the patient (wearing only underclothes or naked in the case of young children) several times a week during weeks or months in towels soaked in cold water (10°C to 15°C). The individual is wrapped with blankets to help the body warm up in a process lasting 45 minutes, during which time the child or adolescent is accompanied by two to four staff persons.
The alleged goal of this technique is to “allow the child to rid him- or herself progressively of its pathological defense mechanisms against archaic anxieties,” by achieving “a greater perception and integration of the body, and a growing sense of containment.”“

Continues here:
http://blogs.discovermagazine.com/neuro ... 2r5naRMGEf

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Re: Packing Autistic Kids: A French Scandal

Post by landrew » Wed Aug 08, 2018 4:15 pm

Sorta like a different kinda shock treatment then?
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Re: Packing Autistic Kids: A French Scandal

Post by OlegTheBatty » Wed Aug 08, 2018 5:45 pm

Laughter Torture is the best medicine.
. . . with the satisfied air of a man who thinks he has an idea of his own because he has commented on the idea of another . . . - Alexandre Dumas 'The Count of Monte Cristo"

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Re: Packing Autistic Kids: A French Scandal

Post by TJrandom » Sat Aug 11, 2018 10:28 pm

How many have died?

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Re: Packing Autistic Kids: A French Scandal

Post by Wordbird » Sun Aug 12, 2018 6:50 pm

How many come in a pack, how much does it cost, and how long does it keep? Just the 45 minutes, or longer if you refrigerate it? Also, do you just have to refrigerate after opening, or do you have to pop it in the fridge as soon as you get it?

(I am actually not dismissing out of hand that this kind of torture could desensitise the children to their own autism along with the torture.)

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Re: Packing Autistic Kids: A French Scandal

Post by Cadmusteeth » Mon Aug 13, 2018 12:17 am

It's among the worst kinds of psudoscience. No one in the scientific community condones this as an actual science. (Read the article if you don't want to take my word for it.)

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Re: Packing Autistic Kids: A French Scandal

Post by landrew » Mon Aug 13, 2018 12:23 am

Cadmusteeth wrote:It's among the worst kinds of psudoscience. No one in the scientific community condones this as an actual science. (Read the article if you don't want to take my word for it.)
But what if it actually works? Trash it anyway?
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Re: Packing Autistic Kids: A French Scandal

Post by Wordbird » Mon Aug 13, 2018 4:23 am

Honestly, sometimes you gotta throw {!#%@} at the wall until something sticks.

No one else has cured autism. I support their right to try.

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Re: Packing Autistic Kids: A French Scandal

Post by TJrandom » Mon Aug 13, 2018 6:07 am

Wordbird wrote:Honestly, sometimes you gotta throw {!#%@} at the wall until something sticks.

No one else has cured autism. I support their right to try.
Agreed - just so long as those who try, but kill their kids in the process, get dropped out of airliners at 10,000 feet - preferably over the city in which they lived, for all to see. (Or some such...)

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Re: Packing Autistic Kids: A French Scandal

Post by Cadmusteeth » Mon Aug 13, 2018 7:44 pm

landrew wrote:
Cadmusteeth wrote:It's among the worst kinds of psudoscience. No one in the scientific community condones this as an actual science. (Read the article if you don't want to take my word for it.)
But what if it actually works? Trash it anyway?
Read the dang article. Patients who received that treatment developed heart problems. Does that sound like it works?

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Re: Packing Autistic Kids: A French Scandal

Post by landrew » Mon Aug 13, 2018 8:23 pm

Cadmusteeth wrote:
landrew wrote:
Cadmusteeth wrote:It's among the worst kinds of psudoscience. No one in the scientific community condones this as an actual science. (Read the article if you don't want to take my word for it.)
But what if it actually works? Trash it anyway?
Read the dang article. Patients who received that treatment developed heart problems. Does that sound like it works?
More abstractly; if the treatment is deemed the lesser of two evils by some doctors, should it still be condemned?
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Re: Packing Autistic Kids: A French Scandal

Post by TJrandom » Mon Aug 13, 2018 9:49 pm

The lesser of what other evil? A refusal to eat can be treated with an IV drip. Self mutilation by gloves or tethers in the worst cases. Having read the article, it seems to me that administration of punishment is at the core - eat or we will package you again. Wasn`t it Silence of the Lambs - rub the lotion on the skin or you will get the hose again?

Where are the medical trials and results on this?

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Re: Packing Autistic Kids: A French Scandal

Post by landrew » Mon Aug 13, 2018 10:11 pm

TJrandom wrote:The lesser of what other evil? A refusal to eat can be treated with an IV drip. Self mutilation by gloves or tethers in the worst cases. Having read the article, it seems to me that administration of punishment is at the core - eat or we will package you again. Wasn`t it Silence of the Lambs - rub the lotion on the skin or you will get the hose again?

Where are the medical trials and results on this?
You're not understanding this. Every treatment has side effects, sometimes quite severe, yet they are still used.
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Re: Packing Autistic Kids: A French Scandal

Post by Cadmusteeth » Mon Aug 13, 2018 10:44 pm

Did you read the article?

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Re: Packing Autistic Kids: A French Scandal

Post by landrew » Mon Aug 13, 2018 11:18 pm

Cadmusteeth wrote:Did you read the article?
Twice in fact; a second time to placate your concerns.
I am not a supporter nor a detractor. I am engaging in the debate by bringing out an argument from a point of view not yet discussed.
Now, please get back to the debate and stop worrying about what I read.
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Re: Packing Autistic Kids: A French Scandal

Post by Cadmusteeth » Tue Aug 14, 2018 12:33 am

landrew wrote:
Cadmusteeth wrote:
landrew wrote:
Cadmusteeth wrote:It's among the worst kinds of psudoscience. No one in the scientific community condones this as an actual science. (Read the article if you don't want to take my word for it.)
But what if it actually works? Trash it anyway?
Read the dang article. Patients who received that treatment developed heart problems. Does that sound like it works?
More abstractly; if the treatment is deemed the lesser of two evils by some doctors, should it still be condemned?
If it doesn’t hold up to scrutiny in the medical community then what does it matter what those few doctors think?
We have reached the consensus that practitioners and families around the world should consider this approach unethical. Furthermore, this “therapy” ignores current knowledge about autism spectrum disorders; goes against evidence-based practice…and, in our view, poses a risk of preventing these children and adolescents from accessing their basic human rights to health and education.

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Re: Packing Autistic Kids: A French Scandal

Post by Wordbird » Tue Aug 14, 2018 2:32 am

landrew wrote:More abstractly; if the treatment is deemed the lesser of two evils by some doctors, should it still be condemned?
That's a really good question. Ideally since the value of any side effect you put on the plate is subjective, the subject should decide if the treatment is worth it to him.

But when you're dealing with human beings who aren't capable of making those decisions, you can either fully saddle the parent with the responsibility, meaning she won't get punished even if the kid dies, or you can try to determine some objective standard of how much the patient was helped or harmed, and if the benefit was "worth it" or not.

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Re: Packing Autistic Kids: A French Scandal

Post by landrew » Tue Aug 14, 2018 3:07 am

Wordbird wrote:
landrew wrote:More abstractly; if the treatment is deemed the lesser of two evils by some doctors, should it still be condemned?
That's a really good question. Ideally since the value of any side effect you put on the plate is subjective, the subject should decide if the treatment is worth it to him.

But when you're dealing with human beings who aren't capable of making those decisions, you can either fully saddle the parent with the responsibility, meaning she won't get punished even if the kid dies, or you can try to determine some objective standard of how much the patient was helped or harmed, and if the benefit was "worth it" or not.
A friend of mine had a severely debilitating form of rheumatoid arthritis. Without treatment, he was reduced to writhing in pain on the floor, and it was deforming his body.
He was offered a drug which promised to eliminate all the negative effects of the disease, but he was warned that could significantly increase his risk of contracting leukemia. He signed the papers and took the treatments at his own risk. He had about 5 good years, free of the disease almost entirely, but one day a few years ago he went for a checkup and he was diagnosed with a rapid form of leukemia. He was dead within 3 weeks.
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Re: Packing Autistic Kids: A French Scandal

Post by Wordbird » Tue Aug 14, 2018 3:18 am

landrew wrote:He was offered a drug which promised to eliminate all the negative effects of the disease, but he was warned that could significantly increase his risk of contracting leukemia. He signed the papers and took the treatments at his own risk. He had about 5 good years, free of the disease almost entirely, but one day a few years ago he went for a checkup and he was diagnosed with a rapid form of leukemia. He was dead within 3 weeks.
And we say this is okay because the patient accepted the risk. It would even be okay if he'd caught hyper-leukemia and somehow melted into white blood cell goop the very next day. His hand spun the Russian Roulette wheel.

Severely autistic kids can't spin the wheel. So how do we handle these sorts of risks? How do we objectively decide what's best for another human being?

In reality, we make them wards of their parents. We let the parents decide. The parents can make a mistake, though, just like your friend could have.

To me, you have to let the parent make any mistake if you're going to saddle them with that burden - the burden of being responsible for someone who can't be responsible for themself.

If you prove negligence, that's one thing - perhaps the parent wanted to pack little Screamin' Demon in the freezer to get rid of it and there's some evidence of this - but if you're going to make the parent the moral agent for Billy's welfare, you have to give them the same right to make a mistake or miscalculate as you'd give Billy if he was capable.

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Re: Packing Autistic Kids: A French Scandal

Post by TJrandom » Tue Aug 14, 2018 10:34 am

I don`t believe the article claimed, or the treatment produced, any objectively identified improvements. Hence I asked about trials - controlled, with results quantified. If for example, this lead to 4 out of 5 no longer being autistic (or even some lesser improvement), but one out of five died, I would be OK with that. But where the benefit appears to be entirely subjective and only in the minds of the practitioners, then I`d ban it pending a scientific study/trial.

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Re: Packing Autistic Kids: A French Scandal

Post by psychiatry is a scam » Mon Sep 17, 2018 12:09 am

autism
Last edited by psychiatry is a scam on Wed Sep 19, 2018 2:23 pm, edited 1 time in total.

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Re: Packing Autistic Kids: A French Scandal

Post by psychiatry is a scam » Mon Sep 17, 2018 12:11 am

psychiatry is a scam wrote:autism is just a fancy word for weak and stupid .
you cant fix stupid .
you can rob desperate parents tho

I know this because that is what I am

I hear that - you cant fix stupid - a lot

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Re: Packing Autistic Kids: A French Scandal

Post by Wordbird » Mon Sep 17, 2018 2:08 am

psychiatry is a scam wrote:I know this because that is what I am

I hear that - you cant fix stupid - a lot
In modern day, stupid is just a word for "person I disagree with."

People can't tell the difference anymore because they're genuinely stupid.

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Re: Packing Autistic Kids: A French Scandal

Post by Gord » Mon Sep 17, 2018 5:32 am

psychiatry is a scam wrote:autism is just a fancy word for weak and stupid .
No it's not. People with autism have difficulty in communication and motor skills, but these are not considered "stupid". Poor skills in these areas can also lead to lower scores on IQ tests that do not accurately represent their actual IQ scores.

Here's an article on this subject from Psychology Today: https://www.psychologytoday.com/us/blog ... ren-autism

I'll pick out a few significant sentences:
...Now it has become more widely recognized that autism has nothing to do with intelligence....

...IQ scores of children on the autism spectrum may not be accurate reflections of their innate intellectual potential....

...The reality is, It's hard to know how much a person on the autism spectrum knows because of the communication, motor, and sensory difficulties they may have....
Here's an article from AppliedBehaviorAnalysisEdu.org: https://www.appliedbehavioranalysisedu. ... elligence/
In the decades before autism was officially recognized and diagnosed, most autistic patients were relegated to the general diagnosis of mental retardation or, in milder cases, learning disabled....

...Today, autism is considered a separate disability from intellectual disability, which is the category assigned to anyone with an IQ at or below 70. Among the general population, intellectual disability rates run at about 1 percent; among ASD (Autism Spectrum Disorder) patients, the rate is closer to 40 percent according to the Center for Autism Research....

...A 2011 study looking into these issues concluded that the links between autism and intellectual disability were less common than had been historically assumed....
So people with autism are more likely to be assessed at lower IQs, but the testing systems may not be able to accurately measure their IQs.

Furthermore, from the previous link:
Autism Is Also Associated With Genius

...In 2015, Cambridge University undertook a study of almost half a million people and uncovered intriguing evidence that autistic traits (although not necessarily full-blown autism) are more common among people involved in the science, technology, engineering, and math (STEM) fields....

...Another study that same year uncovered a likely genetic link between autism and genius—families that were more likely to produce autistic children were also more likely to produce geniuses....

...More and more research is showing that ASD patients are closer to a normal range in both respects than was previously thought. Dealing with each patient as an individual, with their own capabilities and deficiencies, is the core of the functional behavior assessments used by applied behavior analysts to assess behavior deficits and develop treatment plans. In time, the appropriate therapies may prove to both expose and help develop the underlying intelligence of ASD patients.
In short, "autism" does not mean "weak and stupid".
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Re: Packing Autistic Kids: A French Scandal

Post by psychiatry is a scam » Tue Sep 18, 2018 12:35 am

anyway - when parents are looking for help , the system pretends to want to help .
but once the parents are gone - the labels change to schizoid , paranoid ,


and the meds are changed to anti psychotics like abilify - that lead to tardive dyskinesia

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Re: Packing Autistic Kids: A French Scandal

Post by Cadmusteeth » Tue Sep 18, 2018 11:01 am

psychiatry is a scam wrote:autism is just a fancy word for weak and stupid .
you cant fix stupid .
you can rob desperate parents tho
Gee thanks. You’re just alienated a whole group of people with actual problems. But hey! Maybe I’m just too stupid to actually know what you meant.

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Re: Packing Autistic Kids: A French Scandal

Post by Cadmusteeth » Tue Sep 18, 2018 11:07 am

psychiatry is a scam wrote:anyway - when parents are looking for help , the system pretends to want to help .
but once the parents are gone - the labels change to schizoid , paranoid ,


and the meds are changed to anti psychotics like abilify - that lead to tardive dyskinesia
Self-advocating and a support network can help fight these things. It’s not all doom and gloom.

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Re: Packing Autistic Kids: A French Scandal

Post by Gord » Tue Sep 18, 2018 9:15 pm

psychiatry is a scam wrote:anyway - when parents are looking for help , the system pretends to want to help .
but once the parents are gone - the labels change to schizoid , paranoid ,


and the meds are changed to anti psychotics like abilify - that lead to tardive dyskinesia
If you've been diagnosed with schizoid personality disorder or paranoid personality disorder, it's probably because you display enough of the symptoms of schizoid personality disorder or paranoid personality disorder. The medication can help with that. Yes, the side effects can be unpleasant enough to make you want to not take the medication, but that doesn't make the diagnosis incorrect.
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Re: Packing Autistic Kids: A French Scandal

Post by KevinLevites » Wed Sep 19, 2018 5:45 am

I found this "idea about treating autism" to be horribly offensive (although I thank the original poster for bringing it to our attention) because I am autistic.

I currently don't speak to my family because they never accepted my autism. I'm in a similar situation with gay people who come from intensely religious families who believe that being gay is a choice.

My family believes that I choose to be autistic, and that the reason why therapy didn't work was because I didn't "try to get better" because "I want special treatment" so I "don't have to conform" and so on.

Things like this get me very angry.

I better shut up before I rant anymore.

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Re: Packing Autistic Kids: A French Scandal

Post by psychiatry is a scam » Wed Sep 19, 2018 2:22 pm

this is a good place to rant -
just need to try to not let the bullies here get you down
almost like the outside world

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Re: Packing Autistic Kids: A French Scandal

Post by KevinLevites » Wed Sep 19, 2018 4:22 pm

When I was a kid, a lot of people believed that beating autistic children when they were younger was beneficial and theraputic.

The reasoning (assuming that you want to call it that) is that since autistic children were "in their own little world", you beat them when they show signs of this so it "shocks them into reality" (like if you were engrossed in a book, and someone hit you unexpectedly and brought you into the here and now) and, after a while, they learn that "their own little world" isn't the place to be...so they turn away from it and become normal.

Then there was the belief that autism was caused by coming to awareness in the womb. If you put an adult person into a sensory deprivation chamber, over a while the person will hallucinate as the mind turns inward.

There are people who believe that if an infant becomes aware too soon while in the womb, then it's like sticking a small infant in a sensory deprivation tank and that this is why autistic children have trouble relating to the outside world and other people.

My autism caused me no end of issues with my family and professional life, as everyone always believed that I choose to be autistic.

People with Asperger's syndrome (a kind of autism) often have a specific, narrowly defined interest, like trains, dinosaurs, football scores, and so on. This was true with me.

My mother would say "All you have to do is make 'being normal' your special interest, and then you'll be normal. Since you choose to not make 'being normal' your special interest, that means that you choose to be autistic, and you deserve what happens to you."

And so on. I still managed to become a paramedic (I also worked as a flight medic), and I make money on the side writing horror, science fiction, and murder mysteries for different magazines.

I had to cut my family out of my life because they never accepted me for who I am, and they view my autism as the same situation as an alcoholic who won't stop drinking.

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Re: Packing Autistic Kids: A French Scandal

Post by landrew » Wed Sep 19, 2018 4:53 pm

Surgery might be considered "brutally offensive" were it introduced today as a possible new procedure. Who decides the risk-to-benefit ratio of a treatment? Or would we be sure to err on the side of safety, chagrined at the thought of such a procedure?
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Re: Packing Autistic Kids: A French Scandal

Post by KevinLevites » Wed Sep 19, 2018 10:49 pm

landrew wrote:Surgery might be considered "brutally offensive" were it introduced today as a possible new procedure. Who decides the risk-to-benefit ratio of a treatment? Or would we be sure to err on the side of safety, chagrined at the thought of such a procedure?
A process of medical ethics.

I've actually encountered a similar issue from my paramedic career.

A kid named Stuart had a really bad form of Tourette's Syndrome. There is a medicine that can supress the symptoms (called Haldol), but the medicine has horrible side effects that can become permanent even when the medication is discontinued. These side effects may even include a shorter lifespan, and also render him unfit to operate dangerous machinery.

He desperately wanted to be a firefighter/paramedic, and had excellent scores across the board...better scores than a lot of other people who got hired.

Yet his vocal tics included sexual obscenities and racial epithets.

I believe in accomodating peoples' handicaps and disabilities at work (I actually have several disabilities myself), but how do we keep a family member from pulling a piece and blowing his head off when he stands over a grandmother who's suffering a heart attack and he's calling her a "f----g n------r" while he's starting an I.V.?

How do we ethically resolve this situation in a way that's fair to everyone?

I wish I had a pat answer, but I don't. I don't want to be a hypocrite...especially since I'm disabled myself.

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Re: Packing Autistic Kids: A French Scandal

Post by psychiatry is a scam » Thu Sep 20, 2018 2:07 am

Cadmusteeth wrote:“Back in the bad old days of autism they thought it was caused by “refrigerator mothers”.

Well, right now, some psychiatrists have decided that the best treatment for autism is something not that far removed from sticking them in a refrigerator – literally. Enter “Le Packing”, which is the target of an unprecedented consensus statement just out from a list of 18 big-name autism experts (available free here).
This alleged therapy consists of wrapping the patient (wearing only underclothes or naked in the case of young children) several times a week during weeks or months in towels soaked in cold water (10°C to 15°C). The individual is wrapped with blankets to help the body warm up in a process lasting 45 minutes, during which time the child or adolescent is accompanied by two to four staff persons.
The alleged goal of this technique is to “allow the child to rid him- or herself progressively of its pathological defense mechanisms against archaic anxieties,” by achieving “a greater perception and integration of the body, and a growing sense of containment.”“

Continues here:
http://blogs.discovermagazine.com/neuro ... 2r5naRMGEf
book -the history and influence of the American psychiatric association by dr Walter e Barton
this book mentions the same thing - so it is an old scam .
doctors noticed that patients felt better after taking a shower .
so instead of pursuing that - showers , baths , SWIMMING - healthy stuff .
they decided to wrap victims in wet blankets - some died , and the experiment ended -
shrinks proved to themselves that drugs were the only option :frown:

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Re: Packing Autistic Kids: A French Scandal

Post by Gord » Thu Sep 20, 2018 6:37 am

Jenny McCarthy claims to have "healed" her son's autism with a gluten-free diet and vitamin supplements.

I cannot recommend trying that.
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Re: Packing Autistic Kids: A French Scandal

Post by KevinLevites » Thu Sep 20, 2018 6:50 am

The problem is how we perceive autism.

Certianly there are debilitated people who must be institutionalized and/or require lifelong care.

Yet I cringe inside when I keep hearing how it must be "cured".

Einstein, Bill Gates, Thomas Jefferson, Socrates, Isaac Asimov, Abe Lincoln, Isaac Newton, and so on are (or were) believed to be autistic.

I would add one of my heros to that list: Maurice Hilleman. Most people haven't heard of him, but he's saved the lives of about 225 million people. He discovered about 35 effective vaccines for things like measles, diptheria, tetanus, and so on. His possible autism was a gift that let him work on his obsessive interest, which was discovering vaccines.

We autistic people bring a lot to the table, so it wouldbe nice if there was some acceptance for people who give so much.

If we cure autism, do we eliminate the Einsteins, the Newtons, and the Hillemans?